|
|
|
MiCASSA, MFP, & Olmstead in the Dallas Morning News
October 2004
ADAPT, www.adapt.org, introduces the following front- page stories from the Dallas Morning News by writing:
On Sunday the 3rd of October the Dallas Morning News ran the following set of articles as a front page story that went on to be a two page spread inside the front section of the paper. Jennifer LaFleur, the main reporter, has been a long-term investigator of issues related to Freeing Our People! The article mentions MiCASSA, Money Follows the Person, the Olmstead decision and more...
Many with disabilities fight to live on their own
10:40 PM CDT on Saturday, October 2, 2004
By JENNIFER LaFLEUR / The Dallas Morning News
A year ago, Nancy Weisbard's days were filled with running a household, cooking for her family, participating in church activities, attending PTA meetings and driving her 6-year-old son to school.
Today, the house is gone, sold along with many of its contents. Her son is living with friends. And Ms. Weisbard struggles to keep herself busy with puzzles and computer games while she waits for his weekly visits to her new home: a Plano nursing facility.
When she and her husband separated and he moved away, the 44-year-old mother - who uses a wheelchair because of damage to her nervous system from spina bifida - had no other options.
Ms. Weisbard and thousands of other disabled people around the country are forced to live in institutions because the kind of help that would allow them to live at home, often at a lower cost to taxpayers, is lacking. A system that is heavily tilted toward funding nursing-home services persists, despite a U.S. Supreme Court decision five years ago, known as Olmstead, declaring that unjustified institutionalization of a disabled person is discrimination.
"I'm 44 years old, and I've got all my marbles," Ms. Weisbard said. "I have a 6-year-old son who still wants his mommy. As great as it is here, outside of these walls, no one sees or hears you. That's just not the kind of person I am. I was raised to have my own opinions. I was raised to voice my own opinions. Being here, I can't do any of that."
Often, a person disabled by birth, illness or accident has only one option: go into a nursing home and wait for home- based services. Sometimes that can take years.
In Texas, more than 100,000 people are waiting for such services, which include daily tasks such as housework, bathing and meal preparation and health-related tasks such as changing catheters and feeding tubes.
A disabled person can enter a nursing home, on the other hand, with no wait.
One in five nursing home residents surveyed this year by the Centers for Medicare and Medicaid wanted to live independently. The study was based on a survey of about 1.4 million nursing home residents.
Few states have made the Supreme Court's 1999 Olmstead decision a reality. As of February, 29 states had developed plans to do so, according to a report by the National Conference of State Legislatures, which tracks Olmstead progress.
But few have put the plans into practice, and recent state budget cuts have slowed progress, according to a report from the conference.
The cuts are translating into reduced hours for services and smaller programs in many states, said Bob Kafka of ADAPT, a national disability rights group.
"We think that violates what the Olmstead decision said," he said.
Texas ranked as the 13th-worst state for Olmstead compliance in a recent ADAPT study, which examined long- term care financing data and surveyed advocates and people with disabilities in each state. Mississippi was worst, according to the study, with about 87 percent of state spending on long-term care going to institutions.
Low marks for Texas
Sixty-four percent of long-term care spending in Texas goes to institutions. The state also drew low marks because it has large numbers of people on waiting lists."We have people waiting for services because of underfunding," said Addie Horn, deputy commissioner for the Texas Department of Aging and Disability Services. She said the state has tried to provide less-costly services, such as home modification and respite care, to some people.
Despite problems with waiting lists and housing, some of Texas' efforts to move people out of nursing homes are being emulated elsewhere.
Texas is one of only a few states where Medicaid funds can follow a person out of a nursing home into the community, for instance. (A similar program does not exist with other institutions in Texas, however, such as state mental retardation facilities.)
What has become a simple accounting move in Texas has stalled some states' Olmstead progress because it requires them to change their Medicaid long-term care funding systems. In most states, institutions and community programs are under separate budgets, which means they continue to fund the same number of nursing home beds and must add money for community services.
But all the positive things going on in Texas are "totally overshadowed by the lack of money at the front door," Mr. Kafka said. "Because of some of the policy decisions, they are basically discriminating - making people inappropriately have to go into institutions."
A growing need
Historically, society has tended to put aging and disabled people into nursing homes. The bulk of Medicaid funding continues to go to institutional care. As of 2002, nationally 70 percent of Medicaid funding spent on long- term care was spent on institutional care.The need for long-term care is growing as baby boomers age and medical technologies increase the survival rate for people with disabilities. The U.S. Census Bureau projects that the number of Americans 65 and older will double by 2030 and will represent one-fifth of the population.
The Supreme Court did not suggest in its Olmstead decision that institutional care for people with disabilities be eliminated; rather, the decision called for a range of choices for people needing care.
As part of Texas' plan for complying with the Olmstead decision, the state's Department of Human Services has contracted with disability organizations to find people who want to, and can, move out of nursing homes and begin living more independently.
REACH, a network of independent-living centers in the Dallas-Fort Worth area, and two similar agencies in Waco and Austin hope to help 10 people move under the program. So far, they have found 34 candidates.
Getting the word out to people in nursing homes can be difficult, however, because facilities often are not receptive to programs that would potentially remove residents.
Supports must be in place before a person can move out on his or her own. The first is housing.
"That's the number one problem for people coming out of nursing homes," said Susie Reukema, assistant director for REACH of Dallas. "It's hard to find accessible, affordable property."
Most people leaving nursing homes need public-housing vouchers.
Now that all her paperwork is completed, Ms. Weisbard is waiting for a housing voucher - her ticket out of the nursing home.
Her home now is the back half of a room in a nursing home; it has a bed, a nightstand, a dresser with a television on it and a chair. The wall above the television is decorated with photos of her son, Zachary, and pieces of his artwork - the most recent a drawing of a house made from glitter glue.
"I live for Saturdays - that's my day to see him," she said. "I milk it for everything it's worth. It's emotionally draining on me and him. He wants me to either go with him or he wants to live with me in the nursing home. It's a hell of a thing for a 6-year-old to have to go through."
Ms. Weisbard probably will avoid the two- to three-year wait facing many Texans seeking subsidized housing.
Issuing vouchers
The Texas Department of Housing and Community Affairs provides federally funded Section 8 housing vouchers to people with disabilities who are moving out of institutions. In 2001, the U.S. Department of Housing and Urban Development distributed 400 of the vouchers to states; Texas got 35. By recycling vouchers returned from people who no longer need them, the state has helped 37 disabled people who have left nursing homes.Still, there are not enough vouchers to meet demand.
TDHCA spokesman Jorge Reyes said the department gets about two requests a week for housing assistance from disabled people trying to move into their own homes.
Until the state makes more slots available, said Ms. Reukema of REACH, "we have nothing to tell them. It's just kind of limbo. Everything hinges on whether they can get a housing voucher. Their ability to get into the community depends on that."
Susan White, 57, who lives in a nursing home in McKinney, was lucky enough to secure a housing voucher.
Susan White, who lives in a nursing home in McKinney because of severe neuropathy in her legs, plans to move into an apartment Nov. 1. with help from a housing voucher. But finding an apartment that is affordable and accessible has been difficult. She has looked at at least four that were described as accessible because they were on the ground floor, but they lacked features that would accommodate her wheelchair, such as lower kitchen counters and curb cuts to the unit. Last week, she found an apartment that is mostly accessible. She plans to move in Nov. 1.
The state has added a rental assistance program that may help people get housing quicker. It provides up to two years of subsidies to people with disabilities who are waiting for Section 8 vouchers.
Getting housing is just the first step toward being able to leave a nursing home. A person with a disability also has to have in-home services. Ms. Weisbard, for instance, will need an attendant to help her get out of bed, dress and bathe.
Finding, training and keeping an attendant can be an arduous task. Attendants typically earn low wages, so turnover is often high.
"Part of the issue is quality of care providers," Ms. Horn said. "We need more. We need people experienced with working with multiple disabilities."
In Texas, attendants typically are provided through home health care agencies. Attendants, who in many cases perform intimate tasks such as bathing and dressing, may be different people from time to time, based on whom the agency assigns. In a few cases, individuals may hire their own attendants. National disability-rights advocates have pushed for programs that allow individual hiring. Health care advocates argue that that leaves a person with no backup if an attendant does not show up for work.
Seeking enforcement
Around the country, advocates are going to court to press for enforcement of the Olmstead decision. At least 130 lawsuits have been filed in more than 40 states.
In December, a group of nursing home residents in San Francisco settled their 2-year-old class action suit against the city and the state of California challenging the practice of serving senior citizens and people with disabilities at Laguna Honda Hospital and Rehabilitation Center instead of providing community alternatives. In August, the U.S. Department of Justice announced that its investigation had found that the state was contributing to the unnecessary segregation of individuals with disabilities residing at the nursing home.
In Texas, a group representing people with developmental disabilities filed a class-action lawsuit against the Department of Retardation/Developmental Disabilities, alleging that waiting lists for home and community-based services violate the Olmstead decision. More than 24,000 people with developmental disabilities are on the waiting list.
"Many of those people have been waiting eight, nine, 10 years," said Mike Bright, executive director of the organization, The ARC of Texas. "The Legislature has provided extremely limited amounts of funding."
The real impact of Olmstead challenges is yet to be seen.
"There's an awful amount of noise going on about new programs and Olmstead plans," said Martin Kitchener of Center for Personal Assistant Services at the University of California, San Francisco. "But what does it really mean? How many people are actually getting out of nursing homes? There's a lot of people out there hoping it will make a difference."
One of them is Nancy Weisbard.
"People like me," Ms. Weisbard said, "do not need to be in places like this."
For comments: Email J. Lafleur
CHANGES MAY BE IN THE WORKS
Advocates for people with disabilities are pushing for changes that may help individuals live independently. The Medicaid Community Attendant Services and Supports Act, known as MiCassa, was introduced in 1999 and would establish a national program of community-based attendant services for people with disabilities.
The proposed legislation includes training for disabled people and their attendants, backup attendant services and transition funds to pay for moving from a nursing home. Its passage could be years off.
A pending bill, known as "The Money Follows the Person" bill, proposes 100 percent reimbursement by the federal government for the first year a person is living in the community. Medicaid funding currently is divided between states and the federal government.
DISABILITY RESOURCES
. ADAPT is a national disability advocacy organization based in Denver and Austin. 512-442-0252. ADAPT Website.
. The ARC of Texas is a nonprofit organization that assists people with mental retardation and other developmental disabilities. 1-800-252-9729. The ARC Website.
. REACH, resource centers for independent living in Dallas, Fort Worth and Denton, provide advocacy, information and training for people with disabilities. Dallas: Voice: 214- 630-4796; TTY: 214-630-5995. Denton: Voice & TTY: 940-383- 1062. Fort Worth: Voice: 817-870-9082, TTY: 817-870-9086. REACH Website.
. United Cerebral Palsy provides independent-living resources to people with all disabilities. Metropolitan Dallas: 214-351-2500. Tarrant County: 817-332-7171. UCP Website.
. The Department of Aging and Disabilities Services administers community programs. For more information on state services for people with disabilities, contact the local office. Dallas: 214-638-7575; TDD: 214-819-6795. Fort Worth: 817-321-8000; TDD: 817-321-2345. DADS Website.
************************
18-year-old in care center strives for life on own terms
10:40 PM CDT on Saturday, October 2, 2004
Most 18-year-old girls these days are thinking about clothes, college and boys.
How to move out of a nursing home usually does not weigh heavily on their minds.
But it is all Martha Hurtado thinks about.
Ms. Hurtado, who has cerebral palsy, turned 18 in June, which means she can decide for herself where she wants to live. She moved into Park Care Center in Fort Worth three years ago after difficulties with her stepmother.
Her mother died after a 1995 car accident.
"I want to move so bad, I can't stand it," she said, squirming in her power wheelchair.
Her father told her that when she turned 18, she could decide whether she wanted to stay in the nursing home.
With the help of United Cerebral Palsy of Tarrant County, an organization that provides services for disabled people, Ms. Hurtado is just beginning a process marked by paperwork and waiting.
"Right now, we need to find a housing option," said Ray Wall of United Cerebral Palsy. Mr. Wall said he is working with local housing groups to find shared housing.
Once she has housing, she can apply for attendant services through the state.
When she was living at home, Ms. Hurtado was on a state Medicaid program that provides service in the community for disabled Texans.
"So there's a good chance she would meet the criteria again," Mr. Wall said.
As she steered her wheelchair down the halls of the nursing home on a recent day, wearing a blue sweatshirt and blue- checked pants, it was clear Ms. Hurtado didn't have much in common with other residents.
She passes the time watching television or talking to attendants. She occasionally participates in bingo or other games. She stopped attending school when she moved into Park Center, but now attends high school full time.
Her living space is the back half of a room that looks out onto a chain-link fence.
Construction paper cards from a nurse are taped to her wall. One has pink hearts and says, "I love Martha." A silver and blue latched case says, "Martha Hurtado hair supplies."
Experts say that young disabled people in nursing homes often become depressed because they don't interact with people their age.
Mr. Wall, who worked with Martha when she lived at home, said she hasn't seemed as alert or cheerful as she once was.
"She almost seems like a different person," he said.
But he has noticed improvement since she has been back in school.
"I'm starting to see sparks of the Martha of a long time ago," he said.
**********
Nursing home led couple to each other, new life
10:41 PM CDT on Saturday, October 2, 2004
If it hadn't been for Janet Heller's distinctive laugh echoing through the halls of a Richardson nursing home, she and her husband might not be where they are today.
"It's incredible. We have such a love story going on," Michael Heller said, smiling at his wife.
Their story began before they met, when they moved into the same nursing home in 2001 with serious health problems.
Janet Nida came from a Massachusetts hospital, where she had gone with complications from multiple sclerosis.
"It almost killed me. I figured that I might as well die where I have family, so a social worker arranged for me to come home to Dallas. My family had heard that one was one of the best [nursing homes] in the area," she said. "I was 46. I thought I would live the remainder of my life in that building."
10 weeks to live
Mr. Heller, meanwhile, entered the nursing home after medical bills left the once-successful salesman broke and uninsurable. Doctors told him complications from heart problems and diabetes would kill him within seven to 10 weeks.
Living in the nursing home, they say, took away their independence and their zest for life.
After complications from a scratch on his foot, Mr. Heller's left leg was amputated on Dec. 7, 2001, his 62nd birthday.
"Women coming into the nursing home can look like you or me, and in a week they're like that woman just staring at the wall," Mrs. Heller said.
But occasionally in the nursing home, she would laugh.
"I heard a laugh coming down the hallway," Mr. Heller said. "I just had to find out where that laugh was coming from.
Alive and vibrant
"I invited her to dinner. We agreed on Chinese. I arranged to have the private dining room. They accidentally delivered it to her room, and she ended up paying. Embarrassed, I went to her room. I put my hand out like this and she did the same thing," he said, touching his open palm to hers.
He blushed: "It was like zing!"
They married April 13, 2002.
Today - three years after he was told he would survive only a few months - Mr. Heller is alive and vibrant. He credits God and his wife for his survival.
After they married, they began trying to get out on their own.
"I tried calling people who work with the state to figure out how to move out, but I never got calls returned," Mrs. Heller said.
Mr. Heller's former roommate, Cowboy, who had moved a year earlier, put them in touch with REACH, an independent- living center in Dallas.
With the help of family and friends, they bought a double- wide trailer in Plano.
A statewide transitional living program helped pay to set up housing. Medicaid pays for home services, such as attendant and nursing care and medication.
But staying home has not been easy. They have had difficulties with attendants. Some have not shown up on time. Others have not known how to use their equipment. But the Hellers are reluctant to complain.
"Three times, you're out," Mr. Heller said. "We have to be careful."
Attendants help Mrs. Heller get out of bed, bathe, cook and clean.
But agency staffing and recipients' schedules don't always mesh.
"Agencies don't like to send people out at night, which makes it difficult for getting to bed," Mrs. Heller said. But they've worked out a split shift with their current attendant so they have help in the morning and evening.
"It's been a wild ride," Mrs. Heller said. "It's been more a struggle than I thought it would be."
Liquid assets Even so, they are relieved to be living on their own, which they say gives them freedom, privacy and respect.
Now the Hellers' hope is in bottles of water - Nida's Heaven Sent Water, a small water-bottling business they hope will grow.
"It's a fine line: You either need to not make too much money to keep Medicaid, or make so much money that you can pay all your medical bills without insurance," Mr. Heller said.
"If the business takes off, we'll get off Medicaid."
****************
Man negotiated system to get out of nursing home
10:40 PM CDT on Saturday, October 2, 2004
"Before the ADA, no one saw people like me," Chris Tynan said.
His girlfriend, Andrea Lee, friend Charles Friend and Joshua Barrett, his paid attendant, talked with him, while Buddy, a 2-month-old black pug puppy, scurried about his North Richland Hills apartment.
Against one wall stood a computer desk raised to accommodate Mr. Tynan's power wheelchair. A nearly completed watercolor of the Golden Gate Bridge lay on an angled table in the kitchen. Next to it was a collection of brushes and paints.
Because of the Americans with Disabilities Act and other such laws, Mr. Tynan said, "people like me can live on their own rather than in institutions."
And he understands the difference that can make. Before moving into his apartment two years ago, Mr. Tynan, 22, who was paralyzed in a diving accident in 1998, lived in a series of nursing homes.
At one home, he lived in the Alzheimer's ward; at another, on a secured floor for newly released convicts.
"I had people trying to crawl in my bed at night," he said. "Theft is abundant in nursing homes. I got jacked quite a bit."
And a nursing home did not provide much for him to do.
"It basically sucked," he said. "Bingo is not my cup of tea."
Mr. Tynan worked his way out.
He began designing and selling watercolor postcards. He can use his arms slightly, but can't hold a paintbrush in his hand, so he holds it in his mouth.
He earned enough to rent an apartment, which friends and family helped him find. He pays $420 per month of his $565 Social Security Disability income.
His mother researched home care options. A state Medicaid program pays for his attendant, physical therapy and special equipment.
And rather than obtaining attendant care though a home health agency, as many Texans do, Mr. Tynan hired Mr. Barrett through a program that allows people with disabilities to manage attendant services.
It basically cuts out the middleman, which allows him to pay more. Mr. Tynan pays $9.50 per hour - about $2 more than an attendant would earn through an agency.
"With one set attendant, I can pay him well enough to keep him around," Mr. Tynan said, smiling at Mr. Barrett, then asking him to light a cigarette.
Mr. Tynan said it's more challenging. "Nobody helps me find an attendant."
It's also more stressful. "Because if I get sick, there's nobody to help," Mr. Barrett chimed in.
Mr. Tynan said he's happier on his own.
"When I first got out, I didn't have friends or furniture," he said. "It's kind of lonely. You feel vulnerable. But you meet people who are supportive."
Now friends stop by periodically. He's finishing his associate's degree at nearby Tarrant County College. He is a student member of the Association of Mouth and Foot Painting Artists of the World, an artist development organization. He hopes his work will one day make him independent of government help.
A new national program could help Mr. Tynan and others with disabilities who cannot get private health insurance. The program allows them to buy coverage from the government even though they earn too much money to qualify for Medicaid.
Because public transportation is limited where Mr. Tynan lives, he relies mostly on someone else to drive him. He's waiting for his van to be modified through a state program.
Once he has hand controls, he wants to visit family more often, teach some art classes and maybe even put together an exhibition.
"Being in a wheelchair isn't so bad. It's just all the crap that goes with it," he said.
"You can just move your mouth and eyes and still be a productive member of society, but policies and programs prevent us from doing it."
**************
He moved out on his own, helped others do the same
10:41 PM CDT on Saturday, October 2, 2004
Wearing a straw cowboy hat, Howard Knieriem drove his power wheelchair down each hallway at a Richardson nursing facility where he once lived. He poked his head into some rooms to say hello to old friends.
"I made a promise that I would come over once or twice a month," he said.
"Hey, Cowboy," one resident said, waving to him. Mr. Knieriem can't remember exactly when he got the nickname, borrowed from his favorite football team.
The facility is well-maintained. The lobby is filled with dark wood furniture and is decorated tastefully. In one hallway is an ice cream parlor. Off the main lounge is a private dining room.
Mr. Knieriem, 68, moved to the facility in 2000 after he had a stroke while competing in a wheelchair track meet in California.
Born with cerebral palsy, Mr. Knieriem was used to living with a disability. He also was used to living independently.
He grew up in a boarding school for disabled children in New Jersey, then stayed on and worked. When he was 36, Mr. Knieriem went to work on a West Virginia farm. Nine years later, he moved to Texas, where he had always dreamed of living.
He landed in Dallas and quickly became active in United Cerebral Palsy sports, competing in bowling, soccer and track.
His CP affected his right side, so he could use his left foot to push himself backward on the track.
Then the stroke paralyzed his left side and sent him into the nursing home for two years.
"I was getting tired of being in the nursing home," he said.
Mr. Knieriem worked with REACH of Dallas to move into his own trailer in Plano.
"Now every time I go over there, the whole place goes nuts," he said. "I'm the one who busted out of jail."
Many disabled people don't know they have long-term care options. In a few places, organizations such as REACH work with nursing homes to find candidates who could live independently.
Texas' plan for complying with the U.S. Supreme Court's 1999 Olmstead decision included having relocation specialists who would inform residents of institutions about their options.
Currently, however, local disability organizations do much of that work.
As do people such as Mr. Knieriem. Since he left the nursing home, he has helped persuade five other former residents to move into their own homes.
"The main thing I tell people is that if you want people to help you, you have to help yourself first. You have to show them you're willing to fight," he said.
"They do not accept their disability because all their lives, they did everything for themselves, and when the accident happens, they don't want to let go of the old ways. When they see me, they see things a little different."
Today, he spends his days visiting friends, going to movies, gardening, bowling and occasionally helping a friend with his business.
"At home, you can take care of your own affairs - you're in control. You're more human," he said.
He boasts a top score of 278 in bowling, which he does by using a ramp that helps him aim his ball down the alley.
An attendant helps him get out of bed, dress and bathe. A friend comes over regularly to help pay bills.
His bedroom walls are covered with Dallas Cowboys posters. Next to his bed is what he calls his airplane control center: a speaker phone, door opener, television controls, all attached to the wall within easy reach.
Mr. Knieriem says having CP helped him overcome his stroke, because he had already dealt with one disability.
He says his biggest motivation is his dad, who died in the Korean War. His father's photo and Purple Heart hang on one wall of his dining room.
"I didn't want his life to go to waste. So that's why I'm fighting, so he can be proud," he says.
| Benefits | Info | Join | Other Sites | News | Feedback | Calendar | Home |